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Wednesday, Oct 25th, 2017

Pyper came home today. Rejoicing in knowing that this is wonderful news all in itself!!

I picked Gavin up from school and we went for our weekly frozen yogurt treat. I treasure these times with him because it gives Gavin time to talk and me time to listen. Dean had shared some things with Gavin yesterday concerning Pyper and one of them was her eyesight. As he and I sat talking I told him that anytime he had questions about Pyper all he had to do was ask and I would always answer his questions with honesty. “Nana, is Pyper going to be blind”? “No I do not believe that Pyper is going to be blind. I believe that she can see right now. I don’t know how much, but I believe she can. I also believe that God can do mighty things and Pyper being able to see is one of them.”

As I reflect on this conversation the only thing I can think is that no child should have to ask this question and no parent/grandparent should have to answer it. Such heavy things for a 9 year old to have to worry about. My heart is heavy for this little boy who has been through so much and tries so hard to be brave and courageous through it all.

Dean and I went to a worship night at church tonight and through tears we praised our mighty God and lifted up our prayers for Pyper. It was lovely knowing that we were surrounded by people that were praying for her as well. The Word of God was proclaimed over her tonight. God’s promises are YES AND AMEN !!

These are words from a few of the songs we sang tonight. They were soothing to our hurting hearts and fully declared over our sweet Pyper.

Faithful you are

Faithful forever you will be

Faithful you are

All your promises are Yes and Amen

I will rest in your promises

My confidence is your faithfulness (Yes and Amen:Chris Tomlin)

 

What a beautiful Name it is, nothing compares to this

What a beautiful Name it is, The Name of Jesus

What a powerful Name it is, The Name of Jesus Christ my King

You have no rival, You have no equal

Now and forever, Our God reigns (What a Beautiful Name:Hillsong Worship)

 

Let the King of my heart, be the mountain where I run

The fountain I drink from, Oh-oh He is my song

The anchor in the waves

You are good, good, oh-oh

You are good, good, oh-oh

You’re never gonna let, Never gonna let me down

When the night is holding onto me, GOD IS HOLDING ON (King of my Heart:Sarah McMillan)

 

Today I am so THANKFUL that Pyper is home with her family. 

 

10/25/17

Doctor notes from Brandon:

  • Does not have volvulus…which is bowel twisting back on itself
  • Will need bowel tacked and can do that when g tube gets put in to have less surgeries on baby
  • Findings of septo optic dysplasia are pretty well black and white…Dr. Slate is radiologist
  • Having 2nd opinion from Radiologist that looks at septo optic dysplasia would be helpful to see how severe it is with Pyper
  • Duke may have septo optic dysplasia clinic
  • Going to children’s hospital… not a bad idea because all of the specialist are there working together and available
  • Blood draw showed cortisol level to be low
  • They want to do stimulate pituitary gland with ACTH today to see how cortisol levels and pituitary gland react and get better idea of deficiency… ACTH will work out if system in 1 to 2 hours…Will have another blood draw today
  • The doctor said Duke used to have a S.O.D. clinic but that the doctors here can all coordinate and communicate but they don’t have the resources to do a multi functional team per say. Discharging today around 4 pm. No hormone supplements right now.
  • Will send a referral to Vanderbilt in Nashville for a Complex Care Team. Vanderbilt has done several publications on S.O.D. so this will be a good place to get more in depth care for Pyper.   A referral will also be sent to Duke for neuro.
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